At nearly every international MS event I attend, I’m struck by how often the African voice is missing — or misunderstood. The data, the definitions, the frameworks — they rarely reflect our reality. Yet, here in South Africa, we live with MS every day.
We know what it looks like when someone is misdiagnosed for years because no one thought to consider MS.
We’ve seen what happens when the public system says, “There’s nothing more we can do,” because treatment is out of reach.
And we’ve witnessed the quiet heartbreak of people whose symptoms were dismissed because they “didn’t fit the profile.”
The wider view isn’t a luxury. For us, it’s a necessity.
Different Realities, Not Deficits
Too often, it’s assumed that African countries are simply “behind” — that we’ll catch up eventually. But we are not behind.
We are navigating different systems, different challenges, different social landscapes. And that difference matters.
In South Africa:
- Diagnosis is often delayed by years.
- There are no MS-specific care centres — not one.
- Most people with MS can’t access disease-modifying treatments (DMTs) unless they have private medical aid.
- Public hospitals have long waiting lists, limited neurology access, and no dedicated MS pathways.
- And the myth that “Black people don’t get MS” still lingers — doing real harm.
Yet, amid this complexity, we’re finding new ways to move forward.
Local Experts, Real Impact
Some of the world’s finest MS minds are right here in South Africa.
Our neurologists, researchers, and allied health professionals bring not just knowledge, but deep contextual insight. MSSA works hand-in-hand with them to bring this expertise to where it matters most — to the people living with MS.
Our GP Upskilling Webinar Series, led by MS specialist Dr Dion Opperman, reached over 3,000 healthcare professionals — a major step forward in addressing delayed diagnosis, particularly in general practice where MS is often first missed.
We’ve also launched the Brain Health Series, expertly guided by Dr Natanya Fourie and Dr Samantha Gregory — bringing evidence-based insights into fatigue, cognition, and emotional wellness directly to the MS community.
Our MoveStrong with Susan wellness program links patients with a biokineticist to track movement, symptoms, and energy — because treatment is more than medication.
Our collaboration with psychologists and neuropsychologists is growing steadily. We’re building connections, opening conversations, and shaping what support could look like — especially around brain fog, mood, memory, and emotional wellbeing. These are services in the making, and as more professionals come on board, we’re committed to making this kind of care more accessible, even within the public system.
We’re also encouraged by the growing international interest in South Africa and Africa as a region. Experts like Professor Gavin Giovannoni have expressed genuine interest in collaboration, alongside others like Professor Roshan das Nair, whose work in neurorehabilitation and global health is helping shape new conversations about access and context-specific care.
This isn’t theory — it’s the kind of practical expert insight that changes lives.
Bridging Gaps, Not Just Filling Them
At MSSA, we believe advocacy is more than speaking up — it’s about bringing people to the table who were never invited before.
We’re not just a support organisation. We’re a bridge.
Between patients and professionals.
Between urban and rural.
Between lived experience and scientific progress.
We tailor support to each person who registers — and we listen, deeply, to what they need. We integrate expert insights into our webinars, social media, podcasts, and daily peer support. We connect people to answers, referrals, options, and hope.
And we do all of this from the ground up, powered by experience, community, and trust.
Rights Are Not Self-Activating
South Africa has one of the most progressive Constitutions in the world — and it protects the rights of people living with chronic illnesses and disabilities in the workplace. But rights don’t activate themselves.
Too many people with MS are still dismissed, sidelined, or quietly pushed out of jobs — not because they can’t work, but because their symptoms are invisible, unpredictable, and often misunderstood.
MS-related fatigue, cognitive fog, or mobility issues are not always accommodated. Disclosure is risky. Support is rare. And few employers understand how reasonable accommodation can make all the difference.
That’s why MSSA has brought in labour law specialists to support our members. We help people with MS understand:
- Their right to ask for reasonable accommodation
- How to safely disclose or delay disclosure
- What to do if they’re treated unfairly
A legal right means little unless you know you have it — and know how to stand on it.
This is another form of expert insight — not from a clinic, but from the lived realities of work, income, and dignity.
The People Behind the Work
None of this happens in isolation. Behind the scenes, a small team of dedicated volunteers works daily to help make sure people get the support they need. From WhatsApp responses to email guidance, referrals, resources, and check-ins — they are the heartbeat of MSSA.
What makes this team truly powerful is not just their dedication, but their lived experience of MS. Each person brings insight that no textbook can teach.
Together, they make MSSA’s work more authentic, more empathetic, and more impactful — because they get it.
Why This Perspective Matters Globally
The world needs a wider view of MS — not only because it’s the right thing to do, but because innovation, equity, and effectiveness depend on it.
MSSA is feeding South African insight into global working groups, research conversations, and decision-making platforms.
We’ve been welcomed as an Associate Member of MSIF, and we now represent South African voices in the Global Patient Council. We’ve been invited to partner with ECTRIMS on the upcoming Patient Community Day — a sign that Africa’s perspective is no longer invisible.
When Africa speaks, the MS world listens differently.
And we’re not whispering anymore.
The Wider View
This blog series will spotlight the experts, research, and real-world insight that help shape our work. But more than that, it’s a space to reframe how MS is understood — through the lens of where we live, who we serve, and how we care.
Because the wider view doesn’t come from looking harder.
It comes from widening the frame.
Written by Non Smit
CEO of Multiple Sclerosis South Africa (MSSA), long-time MS advocate, caregiver, and global contributor to the MS movement. With decades of experience in support, policy, and patient-led systems change, she brings both insight and lived connection to the work MSSA does across South Africa and beyond.
Published: August 2025